Perceived knowledge and intention to prepare advance directives: a cross-sectional study of Thai gynecologic cancer patients and families

Abstract

Objective

To examine perceived and objective knowledge of advance directives (AD), attitudes toward end-of-life care, and factors associated with intention to prepare AD among Thai gynecologic cancer patients and their family members attending a tertiary hospital in Bangkok.​

Results description

A cross-sectional survey was conducted with 101 patients and 105 accompanying family members recruited between August 2017 and January 2018. Over 60% of both groups had never heard of AD and mean objective knowledge scores were low (3.4/8 for patients and 3.7/8 for family members), with common misconceptions including equating AD with euthanasia. Most participants preferred a natural death without life-prolonging measures. Yet only 6% of patients and 1% of family members had completed an AD, while 22% and 27%, respectively, reported an intention to prepare one. Multiple regression showed that perceived knowledge was the only significant predictor of intention to prepare an AD for both patients (B = 0.339, p < 0.001) and family members (B = 0.246, p < 0.001), suggesting that interventions that enhance perceived understanding may strengthen engagement in advance care planning.

Supplementary Information

The online version contains supplementary material available at 10.1186/s13104-025-07587-4.

Introduction

End-of-life (EOL) discussions are central to high-quality care, enabling patients to receive treatment consistent with their values while reducing burdensome interventions that compromise quality of life [1, 2]. Such conversations can facilitate discussions on prognosis, care preferences, and Do Not Attempt Resuscitation (DNAR) decisions, yet they remain uncommon, limiting providers’ ability to honor patients’ wishes.

Advance directives (AD), as a component of advance care planning (ACP), allow individuals to document care preferences in anticipation of decisional incapacity. ACP has been shown to improve patient–clinician communication, promote goal-concordant care, and reduce unnecessary interventions [3–5]. In Thailand, Sect. 12 of the 2007 National Health Act legally supports ADs and the appointment of a healthcare proxy, with subsequent reinforcement through the 2014 national palliative care policy, which designated ACP as a marker of “good death” and encouraged provider–patient discussions. Nevertheless, awareness of ACP remains limited among both the public and healthcare professionals, constraining its implementation [6, 7].

Despite these policy frameworks, AD uptake in Thailand is low, hindered by limited awareness, provider hesitancy, and cultural norms that prioritize family decision-making [8]. This is particularly concerning in gynecologic cancer, where high symptom burden, rapid progression, and complex treatment decisions underscore the importance of ACP [9]. Yet, even in palliative care settings, AD discussions remain infrequent.

This study examined knowledge, attitudes, and predictors of intention to prepare an AD among Thai gynecologic cancer patients and their family members.

Materials and methods

Study design and setting

A cross-sectional survey was conducted at King Chulalongkorn Memorial Hospital, a tertiary teaching hospital in Bangkok, Thailand. Recruitment occurred between August 2017 and January 2018 among patients attending outpatient clinics for cancer treatment or follow-up.

Participants

Eligible participants included two groups. The first group comprised women aged 18 years or older with a confirmed diagnosis of gynecologic cancer who were able to communicate in Thai. The second group consisted of adult family members or caregivers who accompanied patients to the clinic. Individuals were excluded if they had cognitive impairment, a severe illness that prevented participation, or were unable to provide informed consent. A convenience sampling strategy was used, with the aim of recruiting the maximal number of eligible patients and accompanying relatives within the study period (August 2017–January 2018). No formal sample size calculation was performed, as this exploratory study sought to capture as many participants as possible during the recruitment window to provide preliminary evidence on knowledge and attitudes toward advance directives in this population.

Data collection

The structured questionnaire used in this study was originally developed in Thai by Pipattanawong (2017) in her master’s thesis, Factors determining advance directive intention for the end of life (Chulalongkorn University) [10]. To facilitate transparency and reproducibility, an English-language version of the questionnaire has been provided as Supplementary File 1.

The questionnaire included the following domains:

1. Sociodemographic data: age, gender (for family members), education, religion, marital status, and cancer diagnosis (patients only).

2. Perceived knowledge: single-item self-rating of familiarity with ADs on a 5-point Likert scale which highest score indicated knowing ADs very well and lowest score indicated never heard of ADs at all.

3. Objective knowledge: eight true/false items on AD definition, legal status, and scope. The measure was developed by reviewing factual information relating to ADs from previous literatures. The items were created and validated by conducting discriminant analysis with pilot participants (n = 61). Seven items could appropriately differentiate between the low and the high scorer groups (p < 0.05). Both groups answered correctly one “easy” item representing the general AD information everyone should know.

4. Attitudes toward EOL care: preferred place of death, desired interventions in terminal illness, and perspectives on life-prolonging treatment. The items were developed by researchers based on previous qualitative studies to understand the nature of personal beliefs toward EOL.

5. Experience with serious illness or death: prior involvement in caregiving for a terminally ill person or witnessing EOL decision-making. The items were developed by the researchers based on previous works from Carr and Khodyakov [11] and Luth [12]. The measure was assessed in 2 dimensions, (1) “yes” or “no” experience and (2) how the experience psychologically impacts a person from “not at all” to “the extreme.”

6. Intention to prepare an AD: assessed by asking participants to rate from 4 “have completed the AD” 3 “have an intention to prepare an AD” 2 “not sure” to 1 “no intention to prepare an AD”.

Trained research assistants were available to provide clarification without influencing responses.

Statistical analysis

Descriptive statistics were used to summarize participant characteristics. Multiple regression using IBM SPSS Statistics, Version 26.0 was applied to identify predictors of intention to prepare an advance directive (AD). Independent variables included perceived knowledge, objective knowledge, and psychological impact of the past experience. Regression results were reported as B coefficients with corresponding p-values, and statistical significance was set at p < 0.05.

Results

Participant characteristics

A total of 206 individuals were enrolled, including 101 patients and 105 family members. The sample sizes were adequate for conducting multiple regression analyses of 3 predictors with medium effect size using G*Power Analysis. Patients had a mean age of 48.8 years, whereas family members were younger with a mean age of 40.4 years. The majority identified as Buddhist (patients 92%, family members 93%). More than half of participants had completed at least secondary education. Table 1 presents the detailed demographic characteristics of the study population.

Table 1.

Demographic characteristics of participants

Characteristic	Patient (n = 101)		Family member (n = 105)
	n	%	n	%
Gender
Male	0	0	39	37.1
Female	101	100	66	62.9
Religion
Buddhism	93	92.1	98	93.3
Christianity	6	5.9	5	4.8
Islam	2	2.0	2	1.9
Highest level of education completed
Primary school (Grade 4)	5	5.0	0	0
Primary school (Grade 6)	5	5.0	4	3.8
Lower secondary school	4	4.0	4	3.8
Upper secondary school/vocational cert.	10	9.9	6	5.7
Diploma/higher vocational cert.	5	5.0	9	8.6
Bachelor’s degree	55	54.5	52	49.5
Master’s degree	15	14.9	27	25.7
Doctoral degree	2	2.0	3	2.9
Family income per month
Less than 20,000 Baht	24	23.8	22	21.0
20,001–50,000 Baht	32	31.7	39	37.1
50,001–80,000 Baht	27	26.7	22	21.0
80,001–100,000 Baht	4	4.0	10	9.5
More than 100,001 Baht	14	13.9	12	11.4
Marital status
Single	42	41.6	60	57.1
Married	41	40.6	41	39.0
Widowed	6	5.9	3	2.9
Separated	3	3.0	0	0
Divorced	9	8.9	1	1.0

Awareness and knowledge of advance directives (AD)

Table 2 demonstrated the key survey results. Awareness of ADs was limited, with 63% of patients and 61% of family members reporting that they had never heard of them. Objective knowledge scores were low, averaging 3.4 out of 8 among patients and 3.7 out of 8 among family members. Misconceptions were common; 40% of patients and 33% of family members incorrectly believed that ADs were equivalent to euthanasia.

Table 2.

Key survey results

Characteristic	Patient (n = 101)		Family member (n = 105)
	n	%	n	%
Awareness of AD	37	36.6	41	39.0
Attitudes toward EOL care
Preferred natural death	79	78.2	66	69.2
Supported aggressive interventions	5	5.0	7	6.7
Indecisive, let the doctor decide	6	5.9	9	8.6
Indecisive, let the family decide	11	10.9	21	20.0
Experience with serious illness/death	72	71.3	79	75.2
Plan regarding AD
Completed AD	6	5.9	1	1.0
Intention to prepare an AD	22	21.8	28	26.7
Not sure and no plan	73	72.3	76	72.3

AD advance directive, EOL end-of-life

Attitudes toward end-of-life care

Most participants expressed a preference for natural death without life-prolonging measures if terminally ill (patients 78%, family members 69%). Comfort-focused treatment delivered at home or in hospice was favored, whereas fewer than 10% supported aggressive interventions.

Completion and intention to prepare an AD

Only 6% of patients and 1% of family members had completed an AD. Nevertheless, 22% of patients and 27% of family members indicated an intention to prepare one in the future.

Predictors of intention

We conducted multiple regression analyses to examine the associations using perceived knowledge, objective knowledge, and psychological impact to the past experience, as the independent variables and intention to prepare the AD as the dependent variable for both patients and family. Collinearity statistics (VIF and Tolerance) indicated no issues with multicollinearity. The results showed that the overall models were significant. The variables explained 20.6% of the variance in the patients model (R = 0.454, R² = 0.206, Adjusted R² = 0.181, F(3, 97) = 8.387, p < 0.001), and 13.7% of the variance in the family model (R = 0.370, R² = 0.137, Adjusted R² = 0.111 F(3,101) = 5.345, p = 0.002). Perceived knowledge emerged as the sole significant predictor of intention to prepare an AD for both patients (B = 0.339, p < 0.001) and family (B = 0.246, p < 0.001).

Discussion

This study demonstrated that although most Thai gynecologic cancer patients and their family members preferred comfort-oriented care at the end of life, awareness and completion of advance directives (ADs) remained low. These findings are consistent with previous research from Thailand and other Asian contexts, underscoring persistent challenges to advance care planning (ACP) in the region [13–16]. However, there are very few published studies on ACP in Thailand, highlighting a significant research gap and underscoring the importance of our study in contributing local evidence to this underexplored area.

Perceived knowledge emerged as the strongest predictor of intention to prepare an AD, suggesting that interventions should extend beyond providing factual information to enhancing confidence in ACP discussions. Similar effects have been reported in Taiwan, USA, and Brazil [17–19], where educational strategies that strengthen self-efficacy have been shown to increase AD completion. We note that perceived knowledge was measured using a single-item Likert scale. While this approach reduced respondent burden and was feasible in a clinical setting, it may have limited nuance in capturing participants’ understanding. Future research should employ multi-item validated scales to provide a more comprehensive measure.

Cultural expectations are likely influence ACP engagement. In Thailand, as in other Asian settings, family decision-making often supersedes individual autonomy, leading patients to defer to family members [20–22]. Hewitt et al. highlighted that even when legal frameworks exist, health professionals’ understanding and application of end-of-life decision-making laws can vary, underscoring the complexity of implementing ACP in clinical practice [23]. A regional review by Lee et al. (2014) similarly highlighted how family-centered decision-making shapes ACP practices in South Korea, Japan, and Taiwan [24]. In South Korea, the Life-Sustaining Treatment Decisions Act established a nationwide ACP framework, but its narrow focus on terminal illness often delays timely discussions. In Japan, the absence of formal AD legislation means ACP typically occurs within the family context, reflecting the emphasis on relational autonomy. Taiwan, in contrast, has enacted comprehensive laws—including the Hospice Palliative Care Act and the Patient Right to Autonomy Act—to expand ACP access beyond cancer to conditions such as dementia or persistent vegetative state, although misunderstandings and reliance on family-led decisions remain challenges. In our study, cultural expectations were not directly assessed, which may explain why they did not emerge as predictors of AD intention. Instead, perceived knowledge was identified as the strongest factor. These findings emphasize the importance of knowledge-based interventions while also pointing to the need for future research that incorporates culturally sensitive measures. Such work could further elucidate how family-centered decision-making and cultural norms shape ACP engagement in Thailand and the wider region.

Recent developments in other Asian contexts offer further lessons. In Malaysia, ACP remains at an early stage of development, with progress largely confined to institutional initiatives and research, while national legislation and public awareness are still limited [15]. In Hong Kong, the Advance Decision on Life-Sustaining Treatment Bill, passed in November 2024, established a formal legal framework, marking a milestone in protecting patient autonomy and dignity [25]. Together, these examples highlight both the challenges of initiating ACP and the potential impact of legal reform in advancing practice.

These regional experiences suggest that while cultural values shape ACP implementation differently, all emphasize the need for legal frameworks, systemic support, and family engagement. For Thailand, adapting such approaches while accounting for local cultural values may help strengthen ACP uptake.

Despite a strong preference for comfort-focused care, aggressive interventions at the end of life remain common. Sompratthana et al. [26] reported that women with gynecologic cancers in a Thai tertiary center frequently underwent multiple hospitalizations, intensive care admissions, surgery, chemotherapy in the last days of life, and even cardiopulmonary resuscitation, despite most having signed do-not-resuscitate consents only shortly before death. These findings highlight the consequences of delayed or absent ACP: patients often receive invasive treatments inconsistent with their values and preferences. Our study extends this evidence by showing that the root causes include persistently low awareness and intention to complete ADs among both patients and families. One striking finding was the misconception that ADs are equivalent to euthanasia, reported by over one-third of participants. This misunderstanding has significant implications, as it may create fear or resistance toward ACP. Addressing this misconception through clear communication, culturally appropriate educational materials, and public campaigns will be essential to normalize ADs as a tool to protect patient autonomy rather than hasten death.

Although this study was conducted in 2017–2018, recent nationwide data confirm that ACP uptake in Thailand remains limited. Pairojkul et al. [27] found that among hospitalized palliative care patients in tertiary hospitals, only 28% had ACP documentation, and access to specialist palliative care was limited to fewer than one in five patients. Together, these findings indicate that systemic integration of ACP into cancer and palliative care remains underdeveloped, contributing to the ongoing mismatch between patients’ preferences and the care they ultimately receive. The time gap between our data collection and publication represents a limitation, but the persistence of low ACP uptake in recent studies underscores the continuing relevance of our findings.

Another barrier is the lack of systematic ACP integration into oncology care pathways. Without clinician-initiated discussions, opportunities may be missed. Experiences from high-income countries demonstrate the value of embedding ACP within oncology workflows, supported by documentation systems and electronic health record prompts [28]. Adapting such approaches for Thailand could help normalize ACP discussions and ensure that patient wishes are documented before critical illness ensues.

Building on these findings, the next steps for improving end-of-life care for gynecologic cancer patients in Thailand should focus on multilevel strategies. Educational interventions that not only increase factual knowledge but also strengthen patients’ and families’ confidence in ACP discussions could be adapted from international models and tailored to Thai cultural values. At the health system level, clinician training and integration of ACP into oncology care pathways, supported by electronic documentation, would help ensure timely and consistent practice. Policy-level action, including increased government investment in palliative care services and the development of national ACP guidelines, would provide the necessary framework for wider implementation. Future research should also evaluate the effectiveness of these interventions and explore how culturally sensitive approaches can best promote ACP engagement among Thai patients and families.

Limitations

• This study used a cross-sectional design, which precludes causal inference regarding the relationships between knowledge, experiences, and intention to prepare an advance directive.

• Participants were recruited from a single tertiary teaching hospital in Bangkok using convenience sampling, which may limit generalizability to other settings and regions in Thailand.

• Reliance on self-reported questionnaires may introduce recall and social desirability biases, potentially affecting the accuracy of reported knowledge, attitudes, and intentions.

• Perceived knowledge of advance directives was assessed with a single-item measure, which may not fully capture the complexity of participants’ understanding.

• There was a substantial time gap between data collection (2017–2018) and publication, during which awareness of advance care planning and relevant policies in Thailand may have evolved, potentially limiting the contemporaneity of the findings.

Conclusion

AD awareness and completion remain limited among Thai gynecologic cancer patients and their families, despite a strong preference for comfort-focused care. These findings, together with evidence that patients continue to receive invasive interventions at the end of life, highlight the urgent need for culturally sensitive, family-inclusive ACP education and for integration of ACP into oncology and palliative care systems. Targeting perceived knowledge and fostering early discussions may be key strategies to improve AD uptake and align care with patients’ preferences in Thailand.

Supplementary Information

Below is the link to the electronic supplementary material.

Author contributions

NBP, WP, and NP conceptualized and designed the study. NBP and WP supervised data collection and statistical analysis. NP contributed to drafting/revising the manuscript. All authors read and approved the final manuscript.

Funding

This work was funded by the Ratchadapisek Sompoch Fund, Faculty of Medicine, Chulalongkorn University (Grant No. RA60/115).

Data availability

The datasets generated and/or analyzed during the current study are not publicly available due to ethical restrictions and participant confidentiality but are available from the corresponding author upon reasonable request, in accordance with institutional data sharing policies.

Declarations

Ethics approval and consent to participate

This study was approved by the Institutional Review Board of the Faculty of Medicine, Chulalongkorn University (IRB No.077/60). Written informed consent was obtained from all participants prior to study participation. All procedures involving human participants were performed in accordance with the ethical standards of the institutional research committee and with the principles of the Declaration of Helsinki (1964) and its later amendments (https://www.wma.net/policies-post/wma-declaration-of-helsinki/).

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.